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Fischer A.,Interstitial Lung Disease Program | Du Bois R.,Imperial College London
The Lancet

Some of the most pressing challenges associated with interstitial lung disease (ILD) are how best to defi ne, diagnose, and treat connective tissue disease-associated ILD (CTD-ILD)-disorders with potentially substantial morbidity and mortality. In this focused review, we address aspects of prognosis for CTD-ILD and what indices might predict outcome, together with lessons that can be learnt from clinical trials of systemic sclerosis-associated ILD and idiopathic pulmonary fi brosis and how these lessons might be applied to future studies of CTD-ILD. Source

Frankel S.K.,Interstitial Lung Disease Program | Frankel S.K.,Aurora University | Jayne D.,University of Cambridge
Clinics in Chest Medicine

The vasculitides represent a spectrum of disorders characterized by inflammation and destruction of the blood vessel wall, and these entities commonly affect the respiratory system. Although challenging to diagnose and manage, recent advances in the treatment of these disorders has greatly improved the prognosis for patients with vasculitis, and with the advent of increasingly less toxic therapies, the future for these patients is brighter still. © 2010 Elsevier Inc. Source

Yorke J.,University of Salford | Swigris J.,Interstitial Lung Disease Program | Russell A.-M.,University of Huddersfield | Moosavi S.H.,Imperial College London | And 3 more authors.

Objective: In this study, we aimed to determine the validity and reliability of the Dyspnea-12 questionnaire (D-12) for the assessment of breathlessness in patients with interstitial lung disease (ILD). Methods: A total of 101 patients with ILD completed the D-12 (scale range, 0-36, with a high score indicating worse dyspnea), Medical Research Council (MRC) dyspnea scale, St. George Respiratory Questionnaire (SGRQ), and Hospital Anxiety and Depression Scale (HADS) at baseline, and 84 patients completed the D-12 and a global health transition score at follow-up 2 weeks later. D-12 psychometric properties, including floor and ceiling effects, internal consistency, testretest reliability, and construct validity were examined. Results: The D-12 showed good internal consistency (Cronbach a, 0.93) and repeatability (intraclass correlation coefficient, 0.94). Its scores were significantly associated with MRC grade (r = 0.59; P<.001), SGRQ (symptoms, r = 0.57; activities, r = 0.78; impacts, r = 0.75; total, r = 0.79; P<.001). Factor analysis confirmed the previously determined structure of the D-12 in this patient group. Conclusion: In patients with ILD, the D-12, a patient-reported measure of dyspnea severity that requires no reference to activity, is a reliable and valid instrument. It is short, simple to complete, and easy to score. © 2011 American College of Chest Physicians. Source

Alhamad E.H.,King Saud University | Cosgrove G.P.,Interstitial Lung Disease Program
Medical Clinics of North America

In the last decade, significant progress has been made toward a better understanding of interstitial lung disease (ILD). A valuable tool for the clinician is high-resolution computed tomography, which aids in narrowing the differential diagnosis in patients with ILD and obviates the need for surgical lung biopsy when a usual interstitial pneumonia pattern is present. Clinicians evaluating and caring for patients with ILD need to recognize associated comorbidities. Substantial evidence shows that implementation of a multidisciplinary approach provides a high standard of care for patients, leading to improvements in the accuracy of clinical diagnosis that can significantly affect patient outcome. © 2011 Elsevier Inc. Source

Russell A.-M.,Imperial College London | Sprangers M.A.G.,University of Amsterdam | Wibberley S.,British Lung Foundation | Snell N.,British Lung Foundation | And 2 more authors.
BMC Medicine

Patient-centredness is an accepted term and is perceived by healthcare professionals to be morally and ethically desirable. We are motivated by the belief that this approach will improve the patient-professional experience of the decision-making process and improve health outcomes. We acknowledge that patients, either as participants or as co-investigators, have positive contributions to make to research. As the idiopathic pulmonary fibrosis (IPF) community enters a new era of clinical research activity we consider that there is greater capacity for patient involvement and partnership. Patient involvement in research can be optimised through collaborations in the research design, study conduct, and dissemination. There is increasing interest in using patient- reported outcomes (PROs), such as health-related quality of life, and symptoms measures to inform decision-making and ensure patient perspectives are taken into account. PROs are an essential component of specialist IPF services, to monitor and improve care delivery and to measure and benchmark performance. In clinical trials, PROs can additionally be used to define entry criteria, evaluate efficacy of an intervention, and evaluate adverse events. We suggest that there is a much wider scope for including patient-centred PROs in clinical research and for creative thought in developing patient co-investigator roles. Participation in research activity requires highly refined decision-making processes, particularly in a condition such as IPF, which has an often unpredictable trajectory. The IPF research landscape has changed and the design and conduct of clinical trials in IPF requires some radical rethinking. It is accepted that involving patients in the role of co-investigators will impact the research questions we ask and result in study designs that are patient-centred. IPF clinical trials have been hindered by the lack of availability of validated, disease-specific questionnaires. A conservative approach appears to have been taken to the inclusion of generic symptom or quality of life measures as PRO endpoints. Thus, the impact of new drugs on the quality of life of research participants demonstrates only minimal benefit. It is time to refocus on a patient-centred approach with regards to the co-investigator role, PRO development, and research participants. © 2015 Russell et al. Source

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